Muscular Dystrophy Camapign
   
 

A Members view…..

Attending the FSH Autumn Get Together in Gloucester was something I had really been looking forward to, not just because it was an
opportunity to meet others with FSH and to hopefully learn something I may not already know about the condition but also to meet friends I had made online but had not yet met in person, and where better to do that but in the hotel bar!
  This was the first Get Together I had attended and I’m glad I decided to stay at the hotel the night before the conference as it gave me the opportunity to chat with some members of the group in a sociable environment. Taking part in a fun quiz also gave me the chance to create a team with others who I may not have other wise had the chance to chat to and being part of the winning team was pretty good too!

The conference itself was very informative and well organised. It was good to hear about the latest research from Dr Marita Pohlsmidt and Dr Kristina Elvidge. We were all well aware of the latest government announcement about changes
to the mobility component of DLA and it was obviously of great concern to us all.
 

Alexandra Crompton, MDC Senior Policy and Campaigns Officer reassured us that this change would currently only affect those in residential care but the MDC would be campaigning against this decision.

We also visited the display area; I had a go on one of the passive cycle machines from Medioctech. Ltd, I wasn’t sure I would be able to do it, but after a little persuasion from Peter their demonstrator. Who said I would probably be pleasantly, surprised which I was, I did I the machines will either gently exercise you or you can put a bit of power in yourself. The only problem now is, I want one!! I can easily see myself cycling either my upper or lower body, from my wheelchair whilst watching Corrie!

  

I attended one of the workshops by Gordon McClurg, from Care Management Services about Independent Living. It was interesting and certainly gave me thought for the future. It is also good to know that there is a service there which can advise you with all aspects of independent living present and for the future. Gordon is certainly an inspiration.

It was also a pleasure to be present for the award given to Jet, Les Sutton’s canine best friend, an award extremely well deserved. It just goes to show how important is to provide dogs like Jet to people like ourselves, they can literally be lifesavers. We could all do with a best friend like Jet. I’ll have to get him to give my border collie, Lucy some tips!!

Being at the Get Together showed me that we are all at varying stages of FSH, all uncertain of what the future holds. However, being together shows that we are not alone. We can talk about our worries and sometimes overcome them. The FSH Support Group is a fantastic source of support, corny I know but true!

Stacey Crabtree